Video Transcript:
0:00: We all agree that at the centre of all of our work is our consumer and this it is my very great pleasure to invite Anthony Barrett to come up and speak.
Anthony is a lung cancer patient and survivor. He is affiliated with Chris O’Brien Lifehouse and I invite him to share his experience and his story with us today. Thanks Anthony.
0:26: Hello everybody. Thank you Tracy. Lovely introduction and lovely welcome to Country Too gets your thinking.
My name is Anthony Barrett and I’m here to share a little journey with you. Every most I’d say, well 99% of the people in this room are all in about keeping people like me chugging along, as it were, keeping going. And I’m hoping that my story at the end might give a little beacon of hope, which was something that was mentioned to me early in my discovery.
1:02: I’ll start with a little story about where, what brings me to here. I was born in Perth. Quite a while ago I moved to Sydney. I had a great life in Perth growing up, great family. Everything that Perth offers is a great place to bring up kids.
1:17: By the way, I came to Sydney on work and my job takes me all around the world. My job is in production for concerts. I set up large and small scale rock concerts, conferences, fashion parades. I’m a lighting designer by self taught lighting designer.
1:41: It was in the interim of two tours. I’d just been in America for three months on tour, came back home and my lovely wife, who’s not here today but is at home, said it’s time for you to go to see Doctor Stoltzman. Your cholesterol levels, his main concern.
2:01: So on the way to see Doctor Stoltzman, I had an interesting thing happened. I lost the feeling in my left arm, completely lost it. Walking to his GP surgery and mentioning that to Doctor Stoltzman he was concerned and said look I think the next thing we should be doing is getting you up to our PA for just you know, you don’t seem to be having a heart attack but losing the feeling in your left armour stroke one O 1 kind of comes to mind.
2:33: Anyway, I got up to RPA and very quickly I found myself flat on a table having a stroke test and there was a lot of concern showing and at that point I was a bit worried.
2:48: Later on that night I was in the hospital, everyone seemed to just relax a little bit and I was on the ward and at a whatever time the the changeover happens I heard the two nursing staff talking, you know swapping to the next shift.
Bed 8 that was me came in from possible Tia doesn’t seem to be there but they have found a mass in his chest.
3:14: I was a smoker for 26 years. I smoked about 300,000 cigarettes in that time. I was 40 to 60 a day guy, and I’d given up 10 years earlier because the look on my neighbour’s face from my morning cough said I should give up. And so I did and it was quite easy.
3:36: I just put a packet of cigarettes on the mantelpiece and went right, I’m not going near you. And five skin crawling days later, that was the last time I touched the Siggy.
So the myth of making it that hard to give up is, I think, perpetrated a bit by the tobacco industry to make it harder to give up. It’s actually not as hard as other things.
3:55: Anyway, the for my journey then went from ward to ward. I was like weird out of the stroke ward where unfortunately the poor stroke team had to tell me actually, you’re in the wrong spot. We’re heading you over here.
4:09: We’ve found we’ve found something so obviously full CT scans, PET scan. And then the lovely, lovely Doctor Courtney at the time said, I’m really sorry, but what we found in your chest is not good.
You know, there’s a few indications on the PET scan that things need to be, you need to go and see an oncologist.
So I ended up in the lovely care of Doctor Stephen Cow over at Lifehouse.
4:33:I wheeled underneath the road through the tunnel, which is a kind of crazy journey. And then I popped up into this really nice hospital and that.
Yeah, yeah. And. And that was kind of like, OK.
4:46: And, and of course Dr Cow was like, look, I’m we’re still investigating. Come back in a few days and we’ll we’ll know what’s going on. Of course, he then presented me. I then said to his registrar, look, I don’t want any. I want it straight. I’ve been a smoker for 20 years. I knew it was coming. I want no ********. I just want to hear it. I, I can take it, whatever.
5:08: So of course Dr Cow gave it to me straight. You, you’ve got an adeno carcinoma. It’s stage 4. It’s metastasized to your spine.
5:21: Actually not a lot is going to be on offer for you because it’s everywhere. You’re in late stage 4, You have a mass in your right lung about apricot size, shall we say, lots of spots in your left lung and there’s some pretty severe degradation in L5 and L4 in your spine.
So I’m here to tell you there is hope.
5:49: There’s a new thing called immunotherapy, which I hadn’t really heard of. It was something that Doctor Cordy had mentioned when he found out and that I was just like, well, let’s, let’s just get on with it, you know, let’s let’s go. And he’s like, yeah, it’s not, it’s not quite that simple. There’s tests we have to run. But there is a, a trial that’s available to you. Possibly.
There’s one spot left on this trial. It was a Keynote 598 trial.
6:12: And it was a mixture of two easy to name drugs, pembrolizumab and ipilimumab. It was a combination of those two things. And there’s a double blind trial. And frankly, if the trial was on offer, I’d probably be sticking you with the pembro right now because that’s basically if we go chemo, it’s it’s, yeah, it’s too far gone for you.
6:35: And so at that point, of course, that was the roller coaster that began. Pretty emotional time. Wife was in the room, Bridget was there. And, you know, like I thought I could handle it all, but no, I cried. I cried my little eyes out. And it was like, OK, but it’s basically all right, let’s go.
6:51: Let’s get let’s get this going. Luckily for me, I did get on the Keynote 599 trial after having biopsies.
And, you know, that good one that goes in your back and you’re listening to the doctors argue about which way to do it. And it’s, it’s, it’s, it’s you’re, you’re just trying to meditate. The nurses going. Are you all right? And so no, I’m meditating. Come on. And yeah, So that all happened and then, OK, so here’s the news. The news is it’s extremely bad. It’s you. But you, you have got one bit of good news.
7:20: You’ve got APDL 1 score, whatever that is of 100% and you know everyone goes everyone here knows what that means like I at the time thought that’s a good thing yeah and then don’t go to Google was my advice of course I went 300 hours on Google later and I went oh pity 01 hi. Oh perfect cancer OK no worries it’s completely invisible from your immune system fabulous. But potentially going to do something anyway, I went on to the double blind trial and I was very excited.
7:51: So from from discovery to 1st jab, well, honestly I think it was 7 weeks, 8 weeks. So I was, I was fast tracked, which was fantastic. And it’s probably what everyone is aiming to get.
And brilliantly I had the first injection, went home feeling quite elated because something was getting done. You know, there was OK, we’d got the wheels together. We got, you know, everything was.
8:15
And I had to tell my 7 year old son at the time, dad’s in a bit of trouble and he was like, oh dad, you’re going to lose your hair. I’m like, maybe you’re going to die, maybe. So it was all a bit hard, but luckily the psychologist at Lifehouse was a real boon in that to help us get through those early stages.
8:34: Anyway, I got home that night and I was in bed quite a late and I went to sleep and said oh honey, I think I can feel something in my back. And of course, 7 hours later, I was back in the emergency ward in nine out of 10 pain.
And I’m thinking whoa, this, this is good or is it bad or I don’t really know.
But as it turned out, the pembro had immediately attacked my spinal site and had base, which my sciatic nerve ran straight through the site and it just crushed it.
9:07: And I was in, yeah, quite a lot of pain. Some seriously strange sounding drugs made that go away. So that was pretty happy. And a few days later I was seeing Doctor Cow and he was like, I don’t think this is the you know, I think you might have refractured a vertebrae or it doesn’t, you know, immunotherapy just doesn’t work this fast.
9:27: It’s not the way it goes. He was wrong. As it turns out, three treatment. Well, the other, the next phase was my apricot in the in the right lobe. By the time six weeks later, it was now the size of a Peach. It was double.
9:46: My tumours were doubling in size every five weeks. It was pretty aggressive. Anyway, 3 rounds of treatment later and I’m into my next scan. You know what they found? They found a fingernail size growth where the Peach had been.
10:03: It went away. Pembrolizumab smashed me now. No, I didn’t know at the time I wasn’t getting any IPI was actually getting the placebo on the other half.
Most the trial was abandoned after a year because most people getting the the double we’re doing well. But the side effects were, you know the Nostoratu like and I, that was the start of my journey.
10:26: Now this is 6 years ago.I’ve been on pembro off and on for basically a total of four years. About a month ago I had my one year scan since last treatment. It’s still clear.
10:45: So in a very real way, I feel that a lot of people in this room have contributed to me being alive from what was a pretty dire situation. So I want to thank all of you from the bottom of my heart, because to be here and talk is next to miraculous.
11:09: I made some big decisions over the period to just say, I mean, I’ve done this my whole life. Say yes to everything unless you know know is the the right answer. So I said yes to the trial. I said yes to giving up everything.
11:25: I haven’t had AI didn’t have to give up booze, but I stopped drinking and, you know, I’d already given up cigarettes many times many years before. And or I’m kind of here to say as a patient and I, I bumped into a lot of patients on the wards and it actually shocked me sometimes to hear people’s reaction to yeah.
11:46: And I kind of don’t know what they’re talking. You know, they want me to do this, but I’m not really. And and I’m just like, what are you mad?
11:51: It’s like, move over to someone who wants who really wants it. I think in this age of, as Michael said, in this age of madness that we live in there, people are quite easily swayed to do stupid things.
But in terms of hope, I I want to just say, please use me as an example to any patient that you come across and you just say, look, there’s this guy, he was stage 4, no, stage 4, you know, as bad as it gets.
12:18: He got this new therapy and it’s he’s still going six years later. So I want to use that as a term of hope for everyone. And yeah, basically I want to thank everyone in this room again for keeping me alive. In terms of what you need to do as a person, I, I try to be healthy.
12:39: I’m, I’m failing in a few departments in the tummy department, but I bought a bike. I’ve ridden 10,000 kilometres on it. I, I’m back at work. I still tour the world again now and I, I had to base a lot of my work on.
12:52: I’ve got a, an injection on the third Tuesday, so I can’t go away And, but I’ve managed to work because I’m off to Brazil soon with a band and everything seems to be railing up as normal. And in the back of my mind, there’s always that thing of it’s going to come back. You know, I, I stopped treatment once. Two years in, six months later, little scan. Oh, there’s a little dot. And Doctor Calvin Brilliant said, let’s get a PET scan just to be sure.
13:22: And fair enough. There were now 13 new growths coming down my lymphatic system. OK, start back on the pembro. On the Pembro for a year, the lovely people running the trial went, you know what, years up, have another year.
And so that was just fantastic and I got very lucky. It’s part of my life. I’ve been very lucky my whole life and getting on the trial was probably the luckiest of all the lucky things that have happened to me in life.
13:49: Because, I mean, although Doctor Carr was probably going to put me on the Pembro anyway, I think financial burden of that at the time might have probably killed me anyway. So, yeah, I want to thank the people who ran the trials and everyone in the room who does this stuff to make people like me be able to rave on it, things like this. So, yeah, that that’s kind of that’s that’s my story as it stands now.
14:15: And it’s it’s one I hope to say be hopeful, everyone, because, yeah, I’m living proof that strange things happen to people. Thank you.
14:36: Thank you, Anthony. It’s an incredible message of hope. And I know speaking as someone working in this field, a great source of inspiration for all of us to keep going despite a lot of the the challenges that face us in speaking with Anthony.
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